Tag Archives: mental illness advocacy

The Precarious Jenga Tower of Life with Mental Illness

Jenga_distortedMy son’s life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling – as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben’s help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them – and soon after that disappeared. She told Ben that he was an “absolute inspiration” to her son because he takes his meds –  and has held a job he loves for over two years.

What she hadn’t realized is this:

Sure, Ben takes his meds – but he still doesn’t think he needs them. He is “compliant” because it’s a house rule we enforce – by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We’ve done it before – it is risky and painful to all – and so Ben knows we mean what we say. But the whole “compliance” situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It’s right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out — and we hold our breath, as do so many families in similar circumstances, that the structure can still stand. Continue reading The Precarious Jenga Tower of Life with Mental Illness

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Thank You, John Oliver. And I apologize.

Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds – with plenty of room for punchlines as well. I know – seems like something that isn’t humorous. But this segment provides more respect for mental health issues than so many others I’ve seen. Well-placed humor can do that.

Watch it here:

His opening statement, like all the facts in this comedy-in-truth piece, is correct:

“It seems there is nothing like a mass shooting to suddenly spark political interest in mental health.”

Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire.  But I will let it remain in this thread, because while I myself may have jumped the gun on “judging” this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way) Continue reading Thank You, John Oliver. And I apologize.

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Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to “handle it” alone. Duh, again. Been there – am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment. Continue reading Chris Harper Mercer: A Preventable Tragedy?

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Sons with Schizophrenia: A Tale of Three Mothers

Love matters...but it's not enough
Love matters…but it’s not enough

Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.

But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.

My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.

And it is far from easy. Continue reading Sons with Schizophrenia: A Tale of Three Mothers

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The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care

It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben’s schizophrenia, but that he is willing to take consistently. Ten years.  Three of those have taken place after where our book, Ben Behind His Voices, leaves off – in what one reader calls “open-ended hope.”  At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to “cheek” his meds. He hated taking them, didn’t think he needed them, was discouraged by the side effects.

Rebuilding Your Life with Mental Illness: Delicate
Rebuilding Your Life with Mental Illness: Delicate

Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work – teamwork that included Ben himself, and that’s why it was effective.

What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that’s what matters. He felt like – and was/is – a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben’s adherence to his medication regime.

And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car. Continue reading The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care

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Encouraging Treatment: Loving Parent? or Cruel Dictator?

(repurposed from my final blogpost on “Mental Illness in the Family” on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself. Continue reading Encouraging Treatment: Loving Parent? or Cruel Dictator?

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What’s the Difference When Your Child’s Illness is in the Brain? “Sympathy”

60 minutes recently did a segment on the plight of families dealing with mental illness.  They interviewed many families and healthcare professionals in Connecticut, on how our system fails our Mentally Ill Youth in Crisis.

Deeds: "The system failed my son"
Deeds: “The system failed my son”

Virginia State Senator Creigh Deeds speaks out about how he was attacked by his son Gus, who suffered with schizophrenia. Virginia state senator Creigh Deeds suffered multiple stab wounds, and his 24-year-old son Gus died from an apparent self-inflicted gunshot in what police are considering an attempted murder-suicide.

Read more: Virginia State Senator Creigh Deeds’ Son Evaluated and Released Before Stabbing | TIME.com http://nation.time.com/2013/11/19/before-senators-stabbing-a-shortage-of-psychiatric-beds/#ixzz2rzmupJD6

Connecticut families, in the continued aftermath of the Newtown shootings, still face the same issues of lack of beds, a revolving-door mental health system, and lack of support and help.

How I wish they had interviewed me, too – but the stories of Deeds and the other families are heartbreakingly similar. Sadly, the story in my book is not unique. Many suffer the same issues we do, every day, without support or even understanding.

In the “overtime” segment about stigma, a group of families shares the effect of stigma on their experience, and how a broken leg can bring casseroles, while a mental illness can bring warning letters from the lawyers of your neighbors.

What’s the difference, according to one of the parents interviewed? “Sympathy.”

Watch the clip here:

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Loving through mental illness: “It’s like he disappears…”

Sometimes we say things, and they stick.  Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you’d said it? That’s how interviews are sometimes.

Two years after Ben Behind His Voices was published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book’s journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey – or where they hope to be. Others simply like its message of resilience, strength, and hope – regardless of the cause of the challenge.

Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.

Here is Lisa Capobianco’s story about it in the Plainville Observer, including the quotes I’d forgotten I’d said – to which I added my own italics…

Author to share story of coping with son’s mental illness

November 8, 2013

By LISA CAPOBIANCO
STAFF WRITER
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.
“This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”
Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him”, said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”

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Radio Interview: “We All Got Issues” Show

What’s going on now? Why doesn’t Ben “accept” his illness? What tips help families like ours to cope? Latest interview aired today,  September 23, 2013:

What is life like with a family member who has schizophrenia?  During this episode of the “We All Got Issues” show – schizophrenia is the ISSUE.  Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia.  Randye is also the author of “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”.

Here is the show – starting with the song “The Climb” setting the tone.  Dr. Glenda Clare is an empathetic, knowledgeable interviewer.

 

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“Hearing Voices” Movement…Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben’s symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only “understood” their origin?

brain in hands
Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  “hearing voices” movement – or, in the US, something called Mad In America. I’m glad it has worked for some – but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist “voice hearers,” as some wish to be called. Unfortunately, most of these groups don’t want to recognize the very different needs of people with severe mental illnesses. Continue reading “Hearing Voices” Movement…Not For All

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